'bout time for an update!

So much has happened and I haven't gotten to 'blog' about it. I'll try to re-cap the last five days or so for you.

Thursday was back to Sumana's 'regular' PT. Check out the picture of her playing the Wii with Miss Alyssa. Her pain level has continued to decline and she seems to be at the point where ibuprofen manages her pain (as of Monday evening).

Friday Sumana was fitted for new braces (AFO's in orthotic language . . .ankle-foot orthotics). Mr. Ray was very thorough and measured all of Sumana's quirky angles and shapes. He is going to make her braces 'in-house' so he can make the specific adjustments that Sumana needs. This will be the first time her braces have TRULY been custom-made. Hmmmmm . . . why didn't I realize this before??? Hopefully these new braces will correct her problem of leaning/walking on the insides of her ankles. Miss Kristen was able to contribute to the fitting, too, by mentioning Sumana's persistant walking issues. I can't wait to see the result!

Saturday I had to work at the library so Sumana was home with the teenagers and baby. When I got home we played Wii. She is so good at boxing! She knocks her mom down all the time and manages a knockout at least once a match! That night (ALL night!) I was in the Emergency Room with our foster daughter. It was a very longggg night, but we were very glad we had gone and she was so much better when we got home Sunday morning.

Sunday I had planned on taking Sumana to kids choir and Sunday School, but I was soooo tired we stayed home and I slept most of the day. Sumana needed pain meds that morning and was pretty dizzy anyway, so she wasn't too upset about staying home.

Today Sumana had Daddy helping her with her exercises and he reported that it took her 45 minutes to do her exercises. The good news is that he worked with her to make sure she did them the right way. Later they played Wii and he taught her how to improve her bowling game. (They're playing again tonight and Sumana is AHEAD!!! Maybe Dad taught her too well!!!)

Our electricity went off right after I got home from work, so Andrew, Sumana and I played Skip-bo. Sumana had never played before and it was a bit challenging to hold cards and reach to build her number piles . . . it was probably good exercise!! After two games she really had the hang of it. As a side note, we were one of only 9 homes affected by the power outage . . . over two hours . . . without AC . . . . UGH!!!!!! (I've become very fond of our air conditioners!!!)

This week starts our summer schedule. Jade has class and Sumana has PT every Tuesday and Thursday morning. It'll be an early start for all of us, but then we'll have the rest of the day for other things. Also, we go camping with our college friends and their families this weekend. It's always a majorly fun time!!!

New Dressing

I haven't taken the time to look back through the blog to see if I've commented on the dressings that Sumana has had on her back, but I must say this one is the prettiest and neatest ever! I took a picture today because it's coming off TOMORROW!!! The time has flown by. Sumana has been so much more comfortable this time that we haven't yearned for the 'un-dressing' day like we have in surgeries past. She still takes benedryl once a day, but she hasn't complained constantly about the itchiness.

Also, medicine-wise . . . Sumana has cut back on the pain meds!!!! Instead of 3 times a day, we're down to TWO times a day. It may not sound like a big difference, but we see it as a big sign of healing and progress. She has PT today, so she'll probably need it afterward, but she'll just have Ibuprofen in the meantime. Tomorrow, she goes back to the Happiness House to get fitted for new braces!!! Yea! We're so excited to be able to take care of them so close to home! One less trip to Rochester!!!

Doing Better

Yesterday Sumana had a terrible cough, low grade fever and trouble breathing. So, being the super cautious mom that I am, I called Sumana's pediatrician and took her in. The doctor thought her lungs sounded good, but put her on prednisone to help her through the next few days.

She seem better today and even went outside to play at her sand table for almost an hour. She started back with some leg exercises and goes to PT tomorrow to try to get back in shape.

Meanwhile her mom is totally exhausted. I haven't slept all night since last Thursday . . . but I did get a wonderful nap this afternoon. I'm hoping that since Sumana can get around better by herself I'll be able to sleep again soon!

All Sumana can think about now is having a friend over for a sleepover, camping with our college friends' families and going to Kids Kamp. She has a busy, fun month ahead. Hopefully I can catch alot of fun pictures to share with you.

PT (Pain and Torture)

Sumana has had a LOT of pain this time around. She rebounded well enough on Saturday that we didn't take her back to Strong, but Sunday and today were still pretty high on her pain index. I guess we'll have to reconsider leaving the hospital so soon. When I called the doctor on Saturday he said the only option was to take her back to the hospital for IV pain meds.

I was wearing thin by yesterday, so Sumana layed on the couch more than anything else. I had her moving on Saturday, but I could barely move myself yesterday! I think Sumana paid for her inactivity today. She had her PT re-evaluation today so that she's ready to begin regular PT on Thursday. Her muscles were really tight and she was really dizzy from the pain meds. Miss Alyssa and Miss Kristen were able to get the info they needed, though, so at least that's done!

Yesterday in Word (pictures follow!)

We had hoped to leave early enough in order to have time to visit our friends Giana and Dana in the PICU, but with traffic and construction we only got to the hospital 10 minutes early. The good news, though, was that they were packing up to go home anyway. Yes! By the time we got to the pre-op area it was 9:28. All that effort and we were only 2 minutes early!

They took Sumana back fairly quickly and started to get her ready for surgery. Once they found the requests for nerve monitoring, they had to move us to 'the quiet room' because of the fumes. What a great room! It was a private room with a door, not just a curtain! (It felt like the Taj Mahal!)

As she sat up in the bed, doctors and nurses were coming in and out, in and out. 90% of the people remembered Sumana from previous surgeries. It was so funny! It was like she was a celebrity and everyone wanted to come and get her autograph! (Actually, Sumana's crazy mom was taking pictures of all of them with her!)

We had seen Dr. Sangeev in the hallway as we came down to the pre-op waiting area. He told us that it was his last day and he was moving to New York City. We were soooo bummed. It was always nice to see him and Sumana together . . . they were both born in the same Indian City. Anyway, he made a point of stopping in to see Sumana before her surgery and to say good bye. We'll really miss him, but we're happy to see him moving ahead with his career. If you're reading, Dr. Sangeev, Sumana and her family with you the very BEST for your future!!!

We got to meet the Dr. Constantine, who's in the next class of anesthesiologists after Dr. Sangeev. He took all of Sumana's info and was very friendly and kept Sumana laughing. He was great at setting her at ease. We'll look forward to seeing him at future surgeries.

At the same time, Miss Geri came in with posters and markers, stickers and chapsticks! She's a Child Life Specialist, who's job is to play with kids before their surgery!! She and Sumana had so much fun experimenting with chapstick flavors for her mask. Sumana still insists on having the laughing gas before any needles touch her body! I think it's more about playing with chap stick, though!!!

Dr. Sanders came in to see our girl next and he was his usual efficient AND friendly self. (It's such a nice combination!!!) He marked up Sumana's back and explained his plan again. At that point I asked him if we could go home that night if things went well. He was more than happy to agree to that as long as there were no complications in the surgery.

By 10:50, the OR was ready and Dr. Constantine came to take Sumana back. She and Rocky (her stuffed Black Lab with hospital bracelet and matching surgical cap!)rolled off for surgery 10 minutes early. Greig and I hung out in the waiting room and were joined by Mrs. Curtis, Miss Melody and then Miss Sonja. Thankfully, there were only 2 or 3 more children taken back after Sumana, so we had the whole place to ourselves and we could eat our lunch in our own private dining room (LOL!!!). It really helped pass the time to have these ladies with us.

We didn't have any updates til Dr. Sanders came out at 2:15ish (I think). He said the surgery had gone well. He replaced the lower portion of the far rod with the largest rod he could fit in. This will hopefully allow for many future expansions. The rod closest to her spine was expanded 2 cm and the previously broken rib held up well. I guess there's still a chance it might break again, but he has no concerns at this early stage. So, in a nutshell, things went extremely well and we are very grateful to Dr. Sanders' team and our own prayer team.

Since this post is getting WAY long, I'll try to speed through the 5 hours she was in 'recovery'. When she first woke up she announced to the post-op nurse that she wanted her DAD!!!! UGH!!! So, when they came out to get ONE parent to go back, i stood up and started back, but the nurse said, 'Is dad here? She's asking for him' Whatever!!! I'm just chopped liver (LOL!!) After only 20 minutes or so, they let me go back to, so I guess I'm not holding too much of a grudge!

By the way: they put her in 'the quiet room' again til we moved to the PICU or went home. It was such a great room, because we could close the door if it got noisy and it had 3 chairs and a TV! It was the perfect place to hang out for an extended time. And, we were glad not to have to visit our PICU staff friends!

She started having to do 'number one' within an hour of surgery and so we are now acquainted with another form of 'medical equipment' . . . the bed pan. Not to embarrass her, but let me just say her bed pan got a LOT of use over a 3 hour period!! We had to wait til 7:30 to get a final dose of Toridol (sp?)for the road. Just before that, Sumana WALKED to the bathroom, 25-30 feet away! Then she PULLED herself back into bed for her IV. AMAZING!

We left right after the IV and Sumana slept ALL the way home. THEN, she walked up our grassy hill (in her hospital socks)and in our back door. I've said it before and I'll say it again . . . WHAT A TROOPER!! We gave her an albuterol treatment and gave her a snack, drink and meds and tucked her in her comfy couch! I took the other couch and set the alarm for 2 am. Thankfully, she needed a bathroom break at 1:30 am, so she got her next dose of pain meds without having to be woken up. She was still up every hour or two for bathroom breaks, but no pain issues or lung issues overnight.

So far today her pain level has been at a 10 even with the meds, but the TV seems to help distract her. She also said she wants to play on the Wii balance board with help later, so I'm thinking the pain isn't a true '10'. We'll see how the day goes. As long as we can manage her pain she can stay home, otherwise we may need to take her back in. But, since she knows that I'm thinking she'll do everything she can to stay home.

Yesterday in Picture

Here's a picture of Dr. Sangeev and Sumana. They were both born in Chennai, Tamil Nadu (India). He has been involved in at least two of Sumana's surgeries and Friday was his last day. He finished his residency at the U of R and is now off to New York City for further training in cardiac anesthesiology. We are REALLY going to miss him.

Here's a picture of Dr. Constantine. I understand that he is Greek and he is a year behind Dr. Sangeev in school. So Sumana is working her way around the world meeting new anesthesiologists. So, we'll hopefully see him a few more times before he completes his program. Both men have been extremely friendly and thorough in caring for Sumana.

I can't even remember what you call what Umit does. He's put wires all over Sumana three times now. I know it's to monitor her nerves while she's in surgery, but I don't know what you call it. Anyway, it continued to be a fun morning in the pre-op area . . . like a reunion of sorts. (weird, huh??!!!)

Miss Geri has played with Sumana before. She has the cool job of being a Child Life Specialist. Miss Geri gets to play with kids before surgery. Having an operation just isn't what it used to be! No wonder Sumana likes visiting the hospital!

Miss Geri brought stickers and flavored chapsticks to decorate and 'aromatize' Sumana's face mask. Strawberry with a touch of Kiwi! Yum!

And, of course, our star team captain . . . Dr. Sanders!!! (Yea!!! The crowd roars!!)< span>r>
This is a picture of Sumana about an hour after surgery. She came 'out of it' so quickly this time. Yes, she was still a bit groggy, but nothing like February. I think the anesthesiologists have her figured out!

This is a picture of Sumana standing outside our van when we got home. I think you can see how tall and straight she is. We'll get more pictures soon. But it's a good start! Our foster daughter's first words to Sumana were, "Wow, you're soooo tall!' It was really cute and Sumana beamed.

12 1/2 hours door to door!

Just a quick update to let you know that Sumana's surgery went FANTASTIC!! She was in surgery about 3 1/2 hours and was able to recuperate in the 'quiet room' in the pediatric ambulatory unit. Dr. Sanders was able to use her same incision from the first surgery, so it is really long and goes all around her shoulder blade. However, no other incision was made and nothing new. Woo-hooo!! The rod nearest her spine was expanded 2 cm and a super long NEW rod was put in the lower half of the far rod. (So, lots of expansions should be able to happen there!!)

I can't wait to share pictures from Sumana's social pre-op time. It seemed like she knew everyone and everyone knew her. It was such a riot!!

We're home and it only took us 12 1/2 hours door to door. Thank you so much for your prayers. Dr. Sanders was VERY pleased with the procedure and happy to let us come home tonight!! Yea!!!